Hi folks not posted much cause ive been feeling super duper but here we are back for another dose of tax this afternoon, i tried telling them im to well for chemo but dont think they are having it so tax and herceptin and result of ct scan today. They are still searching hard for my primary cancer.
Hi Ladies
the biotene toothpaste is brilliant and is free is you have medical exemption card as are all our meds from gp. if chemist doesnot have it they will always order it in for you so it doesn’t have to be a boots chemist. My gp has neen brilliant and has toothpaste and difflam on repeat. i have found eating things like chipsticks and wotsits and pineapple ice cream stimulate the taste buds. i am 3 fec down and start tax tomorrow which i am losing sleep over but it has to be done. for me the worst thing about fec was the mouth and then on fec 2 the muscle pain started but my onc reckons the 7 day white cell injections causes this. any tips for handling tax please? xx
Hi there!
Thanks for your replies ladies - the light has come back on and I’m feeling more or less normal - horrah - might even pop into work this afternoon! Thank you so much, you were right, it does get better.
dixons - I found FEC so much worse than my tax (altho I’ve only had one tax so far). I had horrendous sickness and nausea and felt terrible for a week. The tax has taken me longer to feel ‘normal’ because of the tiredness and general miserableness, I felt fine until day 4 when the leg pains started and the white cell injections made no difference to them as I start injecting day 3, by day 7 they has eased. I took painkillers and tried to move about as much as I could, cos sitting and lying down made it worse. My mouth has also been very sore, like when you burn your tongue on hot tea, but I will get the toothpaste as you suggested next time my taste buds disappeared for a while, but seem to be coming back a little now. That’s it! I can now say, because I’m feeling ok today, that it all gets better, just give yourself time and some tlc and let everyone else run around looking after you.
Take care, good luck for tomorrow.
Rachelx
Hello!
The sun is shining here (London) and what a difference that is making!
I got some sleep having taken codeine and ache less today, hurray! Thank you for your words of support and encouragement.
Sophie, how are you feeling today, have you called the ward?
I’ve even managed to drag my heavy legs to the supermarket and buy some food that I thought might taste edible, we shall see. I feel a sense of achievement getting to the shops and back; last tax I couldn’t leave my bed for a week.
X
Hiya! I was up at the hospital this morning anyhow as son had orthodontist, so after we’d sorted his braces, I went over to the chemo ward and asked if I could speak to someone. Well, the staff nurse ordered obs, which were all fine, and then she came to have a chat - instant tears from me (quite embarassing as sitting there with 16yo son, but he was a sweetheart about it, even though he’s not used to a mum whose gone red in the face and covered in snot), but had a good long conversation about how utterly crap I still feel, how awful I’d found TAX etc etc etc.
Anyhow, the breast oncologist wasn’t in, but another onc who used to specialise in bc was, and the staff nurse went to have a word with her, about what I should discuss with onc. at next meeting. Her recommendation, as I have never been neutropenic, was that she would cancel the gcsf jabs for the next round - so long as I promised to monitor temp. etc and to call immediately if felt ill. So that’s one option. Another option is to lower dosage, and the third would be to scrap TAX altogether and finish off with two FEC, which I found very easy to manage. I have also been promised superior pain killers if I continue with TAX.
All else is ok at mo - she more or less reminded me that chemo is a marathon, TAX was a bitch to me, and that if all I can do is lie on the sofa, then at least watch a decent film and not Jeremy Kyle. <grin>. Eat lots of chocolate and sod the housework. And that I was normal.</grin>
She explained that as I had done the full course of gcsf this time around, my bloods would be through the roof, so they were not worried I was neutropenic… so having heard that, I’m actually feeling much more confident. Still have a headache, still feel knackered, but more positive.
See another onc tomorrow for rads planning, and then go back next Thursday for pre-chemo appt, and staff nurse has told me to stick my head round her door when I arrive, to double check that she has filled the onc. in on today’s discussion - and so if I want moral support in pleading my case, she will come into appt. with me.
Result, I feel…
Thanks for all your support and concern, roll on middle of April when hopefully all chemo se’s will be beginning to dissipate for the last time…
Sophie xx
Well done Sophie!
Sounds like they were listening and supportive and are offering various options in terms of ongoing treatment plan.
Proper pain management has been key to my continuing with tax and has made a world of difference, ie I don’t think I could have continued without it. I’ve not needed to use the oramorph this time (yet), but find that when the pain has become too acute the codeine has helped. Also, the onc reduced my final dose of tax due to the se’s experienced and not having the gcsf has undoubtedly made a difference.
I’m glad to hear how supportive the nursing staff and onc were.
Do you know when you’re starting rads yet? I go in for my planning appointment on the 8th and start on the 30th March (5 wks).
Take care and rest well. I’m feeling cold and tired now, so I’m about to climb back in to bed to watch a film!
Xx
Puff, I was going to ask if anyone else had either not had or stopped with the gcsf. I know Lif didn’t get it and ended up neutropenic, but wondered if anyone else had had them once and screamed ‘no more’! So glad to hear that this has made a difference for you.
I have my rads planning meeting tomorrow at 9am, so will hopefully soon find out when I’ll start. My last chemo will be the first week in April, so I’m thinking poss. end of April/beginning of May? I have to travel to Southampton for them, as they don’t do 'em in Salisbury, which is a bit of a drag… over an hour each way and not much in the way of parking… but what there is costs a fortune! I must remember to ask if I can get any sort of pass… even a weekly pass should work out cheaper… Salisbury you can get away with buying a ticket for an hour, even if you’re there for three or four…can’t see Southampton being quite so simple, think they have barrier car parks!
There’s something very positive about going for rads planning… it just makes the end of chemo seem so much real, it’s nearly done, it’s nearly done…
Sophie xx
Phew Phew!!! Glad ur ok Sophie!
My bloods have always been over 4 when tested except once and the time I got sick was down to an unknown infection picked up at the low nadir…which could happen to anyone!
I got my dose lowered and it has been very copable with just the usual crap!
Personally I would on balance go for the lowered dose rather than those injections…which sound horrid both to administer and in ses!
Rads is a walk in the park…and hiariously funny…
evening all, didnt get my tax or herceptin today they were running so late i wouldnt have gone in until late or got out before 7.30pmm so a reprieve for today back tomorrow at 8.15am.
LiF - combination of lower dose and no jabs sounds perfect to me, esp. bearing in mind I have a holiday in Cornwall less than two weeks post TAX2 and have every intention of having both energy and appetite…lol
Sophie x
Hatty, not sure whether to go ‘yay’ or ‘boo’… on balance, prob. ‘boo’ as it all just postpones things… fingers crossed they are quick at sorting it all out tomorrow, and that the se’s have got bored of hounding us all and go on holiday for a few weeks.
Sophie xx
Sophie, sorry you’re going to have to travel to S.hampton for your rads treatment. Can you get any assistance with the travel costs/expenses?
I know, finishing chemo and starting rads brings the end of treatment that bit closer.
LiF - glad to hear that you found the rads a walk in the park & hilarious, how so?! Did you experience fatigue?
Today’s little joy is the shape bending, rainbow colour (yellow & red), with Dali-esque shapes as they ripple and lift off my nail-bed, most attractive! Not to mention the clumsy numb fingers. I keep on dropping things…
Hatty - sorry to hear you didn’t get to have your tax & herceptin. It must be hard when you’re psychd up for it.
Xx
sophie
i did the same went to hospital for pre TAX 2 (tomorrow!!) bloods and bumped in to breast care nurse who said come n have a chat and i blubbed so much - it all came out - how crap i felt after TAX1 and how unhappy i am. i have been having couselling but didn’t feel it was positive - she was brilliant saying well we will try a different counsellor!! as simple as that - no questions- i had been afraid to talk to the bc nurese cos i am so afraid of saying anything about side effects in case it brings the words “we want you to stay in hospital” but she was really good and supportive.
really hoping TAX 2 is not delayed tomorrow that will be 6 of 8 - a bit nearer to the finish line of chemo at least.
question - my hair came out on first of 4 FEC, now had TAX1 and hair stumps hanging on and dare i say even trying to grow - 3 more TAX to go - is my hair likely to “go” again???
hugs to all
claire
Personally, I have found the GCSF injections easy for OH to administer and they didn’t give me any SEs.
I know that doesn’t help your decision Sophie, but thought it might allay someone else’s fears. My white cells took too long to recover without them - maybe it’s cos I’m older.
Sophie - I found the nurses much better at sorting things out. My onc is nice enough, but I think he likes his statistics and charts more than knowing about your SEs.
Hattie - how annoying to have to go back tomorrow.
Good luck to all those making decisions, having treatments, enduring SEs.
Back to the settee. Stella xx
Claire - good luck for tomorrow. Glad your bcn was so supportive, it sounds like you needed a howl just as much as I did!
LiF… yes, do share, we need to know the source of so much hilarity during rads… did you forget where you were and strip off in the car park?
Puff, I could poss. get hospital transport, but that would mean hanging around for hours whilst all other victims got rayed…think I would rather pay the parking and get there under my own steam! Could also really catch train to Southampton (oh train driver, so free rail travel, yippee), but station nowhere near hospital, so would prob. spend more on cab or bus fare than parking… hmmm! I did use to live in Southampton, so could poss. pick a different friend each day to go have coffee with…
Sophie x
hi girls Tax 1 for me tomorrow thanks Dancing Girl, I’m really quite scared, will be having GCSF for the first time too as had neutropenic sepsis last week. Does low wcc delay the chemo oncologist seemed to think not.
I’ve got codiene and diclofenac in the cupboard from post op paracetamol & brufen too so should be ok for pain killers.
I feel really sad that I might lose my nails, they are one thing I can grow beautifully, just another loss to add to the list, this really really is a s*££y disease.
moan over
hugs(((())))
Pat
Good to get all your news - and tales of woe. Not sure I could cope with a postponement so well done Hatty for seeing the positives… Am feeling bit better today but still only going for half hour walk even though it’s sunny - must make more of an effort if I can tomorrow and there’s free VitD of offer! Mouth is foul - but flucanazole tablets are helping - am getting used to not enjoying food for a while - just wish I did not crave salty crisps so much as I’m trying to be healthy!! But it’s a good excuse to have a treat! Pineapple and clementines seem to also hit the spot. Big breath today as gave in notice at work - am 59 next week and decided to get on with life and go for early retirement - big decision but it feels good to now be able to focus on treatments and “life”. Have my scan post dose 3 in a week and a half so keeping fingers crossed it’s good news - could be a good birthday present!
take care all
Fran
Fran - well done on taking the big step of handing in your notice - I think it’s a fine decision, and wish you a long, happy and fulfilled retirement. What’s the betting you’ll be busier than ever post-treatment?!! I feel I have spent so much time on the sofa that once I am well I shall never sit down again…lol…
Good luck with the scan - when is your birthday? Glad you’re feeling better, a half hour walk sounds quite impressive to me, it took me that long to get to the village shop and back yesterday, and it’s only a five minute walk!
Sophie x
Pat, have you heard the tip about wearing dark nail varnish to protect the nail bed from light whilst on TAX? Opinions seem to vary on whether it works or not, though my chemo nurses all recommend it, so there may be some basis in it. I use nail strengthener first (hardasnails is good, you can get it in superdrug), then a couple of coats of dark purple polish, finished off with another coat of hardasnails. I’m only (almost) two weeks post first TAX, so early days, but nails seem strong as ever at moment.
You sound well prepared with pain meds. The chemo nurse today told me that a combination of codeine and ibuprofen was effective with TAX - wish I’d known that a fortnight ago! Hopefully the jabs and chemo will be kind to you - remember that not everyone has problems with either - so fingers crossed you’ll find TAX a breeze, particularly as you’ve been unlucky with neutropenia already.
Sophie x
Ok…the hiarity in rads was as follows…
All and I mean ALL the men there seem to be being treated for prostate cancer and ALL come with a rolled up bath towel and a newspaper…bit like a secret society arriving…and reminds me of going to the swimming pool or beach!!
Me on the otherhand…I manage to go into the changing room that has 2 doors forgetting to lock the one behind me…
Take off jumper teeshirt and bra and just about to put on gown before i go out through the other door…when door I forgot to lock opens and am confronted by one of the toel and newspaper clan…don’t know who went the most red…but I learned my lesson and it was a bit of a giggle!